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Teresa, Volunteer Mentor (@hopeful33250)

Welcome to the NETs Group! Come say hi.

Neuroendocrine Tumors (NETs) | Last Active: Sep 5 7:47am | Replies (383)

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@tomrennie

I have pancreatic NETS that have spread to my liver. I was diagnosed in August. I am a Mayo patient. My care team is amazing. I started my 6th CAPTEM chemo cycle today. My year end scans showed the cancer isn't spreading and the three large tumors all decreased in size. My wife has been awesome. This isn't easy. Over time through trial and error, we have learned to manage meds and my body better. I am 57. I was told that I will have to continue to manage the cancer the rest of my life. It isn't going away. I appreciate the honesty of my care team of 6. I have a patient portal where I can send or receive messages 24×7. I also have a dedicated hotline to call. The hardest part initially is understanding all of the medical lingo. When I first met the doctor, I told him that I didn't understand anything he was telling me. Dumb it down for me. He asked if I liked pictures. My wife said we both do. 3 pages of doctor drawn pictures and 15 minutes later, the doctor answered all of our questions. I started chemo a few days later. Comments, questions, please share.

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Replies to "I have pancreatic NETS that have spread to my liver. I was diagnosed in August. I..."

Hello @tomrennie and welcome to the NETs discussion on Mayo Clinic Connect. It sounds like you have an incredible medical team at Mayo! That is good news that the cancer is not spreading and that some of the tumors have been reduced. You must be so pleased with these results.

I love the way you asked your doctor to "dumb it down." I may use that at some time in the future. The fact that your doctor took the time to draw pictures is great. You are correct when you say that cancer is something that needs to be managed for the rest of your life. So true!

I have had three surgeries for NETs in the upper digestive tract and mine were found "incidentally." In other words, I wasn't having any symptoms, they were found during a routine upper endoscopy.

I would be interested in knowing how your cancer was diagnosed. Were you having symptoms that led to the diagnosis? What type of tests/scans were done to determine that this was NETs?